A letter from Fernanda Copeland, Executive Director, Head Patient Advocacy & Engagement at AVROBIO March 24, 2020 We hope...
Read moreBy Cystinosis Research Network
March 24, 2020
Treatment announcement: Horizon has made tear-open granules packets available. Details available at http://bit.ly/37zXmY
Read moreBy Cystinosis Research Network
February 18, 2020
How will you honor the “rarest” day of the year? Check out our cystinosis awareness giveaway. Sign up and...
Read moreBy Cystinosis Research Network
February 5, 2020
Recordati Rare Diseases announced the launch of a new educational website: www.cystinosisinfocus.com. The site aims to help families manage...
Read moreAmgen has partnered with Believe Limited and the Cystinosis Research Network to bring back the third annual, Speak Up,...
Read moreAs of October 6, 2023, Amgen officially acquired Horizon Therapeutics. For our cystinosis community using PROCYSBI as a therapeutic...
Read moreThe long awaited Cystinosis Advocate Newsletter is here. Choose from research updates, advocacy efforts, family stories, events, cystinosis support...
Read moreIn May 2023, Novartis acquired the investigational autologous hematopoietic stem cell (HSC) gene therapy program for the treatment of...
Read moreCelebrate Halloween from home this year. ALAB invites you to a free, online event that will test your spooky...
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